r/BladderCancer

It's taking a long time to get results about my pathology from the TURBT I had on April 13. I spoke to a PA today who was looking at the notes from my surgery, and he seemed to infer that I could be looking at a bladder removal, but I would have to wait till doctor can see the report. I am feeling very sad, and looking for support. I contacted BCAN but nobody has gotten back to me. I am 72 and just moved back from Sweden where I saw a doctor last June, and nobody thought to do an ultrasound of my bladder as I was bleeding. Water under the bridge as I probably had a tumor then.

Diagnosed in OCT ‘24, (Low grade non invasive) TURBT done in Nov 24, another done in June ‘25 followed by 6 weeks of BCG. April ‘26, Cystography in office, 4-5 new ones and one removed and biopsied which came back with the same previous diagnosis. His suggestion was try a Chemo instillation or wait for future growth and have another removal. I chose the former but after two weeks heard back

“Unfortunately, the Zusduri/Mitomycin bladder instillation is new and not yet available and our Cancer center. This is in the works but may take months to set up”

The doctor recommends “get another cystoscopy in the operating room where he can remove the bladder tumors and use Chemotherapeutic agent in the bladder”

I know it’s low grade , but I’m thinking another hospital/doctor/opinion will tell me a different story? Am I getting carried away? If I go to the “TOP Cancer Hospital in NYC” will they have the magic pill?

Thanks

Most cancer support groups are pretty general, are there any that are more structured by cancer type, treatment, location, and also connected to clinics or caregivers?

With bladder cancer, what if your biggest fear? Which fear is loudest?

So, I have an upcoming physical next week and did blood work this week in preparation for that. I got my results back and saw that my PSA is high (PSA total 4.83). Since 2017, it's been between 1.99 and 2.2

I messaged my oncologist today to see how concerned I should be. Of course I did a quick AI bot search (chatgpt) that indicated it could be due to inflammation from the BCG treatments (although my last treatment was Jan. 21). It also noted an enlarged prostate (which I have) could be the cause as well.

Has anyone else seen their PSA spike like this after going through treatment? If so, was your oncologist concerned about it?

I was diagnosed with T1 non invasive bladder cancer last month after doctors discovered a 5 cm tumor in my bladder during a kidney stone surgery after being admitted through the ER. This came out of nowhere and turned my world upside down. I’m a 44/f, married with 2 young children.

I have had persistent back pain on the left side since February (when the kidney stone issue started). I’ve had 3 CT scans in the last 2 months and 2 surgeries. I thought the back pain would subside after the last surgery when they removed all stones (from the left kidney and ureter) and the stent. However, the back pain is still daily and persistent and I am worried. I am following all instructions (drinking tons of water, taking medication as directed, etc).

I lost my mother to kidney disease/heart failure in January so I am really spiraling. I have my first BCG treatment in the morning. Is this back pain normal, or should I push for further examination? I have already been told insurance won’t cover a PET scan due to my low grade, non invasive (now removed) cancer. (By the urologists when I asked, not the actual insurance company declining it.)

I had some bleeding in February/March in my urine. My PCP thought it was an infection but it wasn’t going away, so I had a CT scan. CT comes back pretty normal, bladder was “unremarkable.” I was still bleeding, with no other symptoms, so I went to the urologist who noticed the bladder wall had thickened and ordered a cystoscopy. Cysto showed a >3cm papillary tumor - to my shock, as someone with no family history, doesn’t smoke, nor meets any of the typical profiles that you hear about. I do drink red wine but that’s about it.

Had the TURBT today and was extremely nervous. I currently have a catheter but get to take it out tomorrow afternoon! Currently awaiting my results, hoping for the best but expecting the worst. Anyone around my age with a scare but it turns out being a happy ending that wants to share to get my mind off the worst a bit? I’ll share my results once I have them!

And then the diagnosis. Cancer. It didn’t come with thunder or a Hollywood fade to black. No alarms. No cinematic pause. Just a word dropped into the middle of an ordinary sentence, in the middle of an ordinary room, under ordinary lighting—like the doctor could say it and the world wouldn’t even flinch. In my gut, I already knew something was wrong; I just didn’t want that to be the answer. I wanted it to be inflammation, stress—anything that wasn’t this. I wanted the body to be theatrical about it, at least—give me a sign big enough to match the fear I’d been carrying around like a free weight I couldn’t put down.

It came instead in a grandfatherly voice: “That sure looks like cancer,” like he was pointing out a stain on the ceiling. The words didn’t slam into me—they stacked themselves on top of everything I already knew. They settled in my chest like they planned to stay. The room stayed the same size. The papers on the counter didn’t burst into flames. Somewhere a hallway door opened and closed; somewhere a phone rang and was ignored. Outside, the world kept acting like the world, and that was the strangest part—something this huge happening under glaring fluorescent lights while everything else kept moving.

I nodded like I understood, like I could speak a language I had never wanted to learn. I nodded the way you nod when you’re trying to be brave in public. Inside, something went quiet—every sound in me taking one step back, my thoughts trying not to spook whatever had just arrived. And then the quiet turned into noise: a rush, a roar, like a waterfall in the desert—impossible and relentless, the kind of sound you can’t see but can’t get away from.

The silence and the noise eventually evened out. In those seconds, yes seconds, everything turned upside down. Questions came and went. “No, we can’t resect that tumor here. It has to be in a hospital in case there are complications.” Another appointment, another period of waiting. Three weeks. Three weeks with a large, deadly mass growing inside me.

My personality rarely presents itself as gregarious and outgoing. I do like people, but they take energy from me. So, to the world, I wasn’t screaming about the unfairness or the possibility of death or the other things that turned my brain into a browser with fifty tabs open. Instead, I was me. No real change.

At that point in time, I was sick physically with the cancer, and I had a herniated disc in my back. The pain was intense—unrelenting and debilitating—the kind that doesn’t just hurt, it takes over. It made everything smaller: the room, my patience, my options. Sleep was elusive. I couldn’t sleep in our bed. Sitting hurt. Standing hurt. And all of it sat under the bigger, quieter truth: there was a tumor inside me, and we were still waiting. Moving forward seemed impossible. Not because I didn’t want to, but because I couldn’t see the next step without collapsing. It was too much, too hard, too useless—like trying to carry water in your hands and being surprised when it keeps slipping through. Layers of anger and rage boiled up, sudden and hot. Anger at the timing. Anger at the system. Anger at my body for betraying me and then demanding my full attention while I was already drowning. Always on guard when these things happen, I stopped and asked God for peace—simple, blunt, because I didn’t have energy for lavish prayers.

That helped, but it didn’t take the fear away. It wasn’t a light switch. It was more like someone turned the volume down just enough that I could hear myself. The anger settled first—the scalding eased into something quieter.  In its place came a sense of peace, not the kind that makes you feel safe, but the kind that makes you steady. Like permission to breathe without having to solve everything at once. The fear still stayed close. It lingered in the corners, in the quiet minutes, in the pauses between phone calls to doctors and other caregivers, in the darkness before sleep took over. But for a little while, I could perceive: the reality of what was happening and the quiet I was asking for. At that moment, it was everything. I could be terrified and still not fall apart. I could wait without letting it eat me alive.

Hi everyone,

Just a desperate sister here hoping to get some insight into bladder cancer. My little brother was dx with BC ten years ago at age 42, he has had the best of treatment through the years. The original cancer had not gone through the bladder wall. Roll on 5-6 years, he had to have a kidney out. He wouldn't tell anyone why.

Last week he was in hospital having a stent put in his pancreas. They have discovered cancer in the pancreas.

He is very closed with what he says and the info is passed to me through my 88yo mother whose mind is not the best at times. Her 90yo boyfriend has his wits about him and basically said the prognosis is grim.

Because the cancer started in his bladder, is the cancer in his pancreas a metastasis of that or could it be unrelated/a separate tumour on its own?

Male 47yo high grade urethral/prostatic carcinoma Had 4 TURP/TURBT in the last 10 months really quick recurrence with complications in between (bleeding and getting clogged catheter). After my last TURP/TURBT had issues with catheter clogging while recovering at the hospital I was already in extreme pain when they inserted the new thicker new catheter I went into chock. Now I'm due for BCG but my urethra is extremely tender. Even with double shot of numbing gel once the catheter is around 8" inside I get uncontrollable pain. Tried twice with no success and now I have almost daily nightmares about catheter.

I'm exhausted this whole thing is screwing with my mental health as well. At this point I want to just stop treatment all together.

I was hoping to try Pembrolizumab instead my urologist said I would not be eligible and would cost 100s of thousands for it but could arrange a referral with an Oncologist. But when I replied that I would like to see an oncologist the dr. Stopped replying.

I don't know where to go from here. I was wondering if anyone could point me in the right direction in trying to find an oncologist in Ontario maybe my family doctor can send a referral and I can try to get it covered somehow.

Any help is greatly appreciated.

Hi everyone,

My husband is currently considering BCG+ANKTIVA for his non-muscle invasive bladder cancer (NMIBC) treatment, and we’re hoping to hear from anyone who has experience with this treatment.

We're just trying to go in as prepared as possible and it helps so much to hear from people who actually lived it.

Thanks so much in advance, this community means a lot. 🤍